Tuesday, August 31, 2010

WELL i got thrue my surgery last wednesday, had ERCP done. wasnt sure if it was going to happen. i got to hospital, asked million of questions and they had needed clearance from my lung dr so he wrote them a note and said yea i can have surgery but im high risk because of lungs etc and so my dr i guess didnt realize this and was taken off guard and they acted like they didnt wanna do it. started talking about how this is a simple surgery but with my problems its different yada yada . in the end i thought i would have to stay over nite and with breathing tube down my throat but i made it thrue just fine thank god!my sis was there with me the whole time and she kinda freaked from what the drs were sayin so while i was knocked out called some family and was getting them all rowled up, i think they thought i wasnt gonna make it lol. in the end my boyfriend shed a tear for me wich iv never seen and ill take it! lol even if it was just because he was scared for me. moral of the story i made it thrue, and oh the nurses and drs seen my BIG A$$ HINEY! lol so glad i was knocked out! just knowing theyve seen me naked has me tramatized, this was my first surgery!

But then 2 days later had a fever really bad, chills i thought would not stop. i had 2 comfortors on me, heating blanket, bf's body heat and couldnt get warm for 2 hrs then got so hot i stripped down to practically naked wich iv gotta be hot for me to be laying there like that( i like to be covered up) lol so hrs later started sweating so fever lasted from 10pm till 1pm next day! ugh i was exhuasted, my body hurt, everything hurt. i finally feel so much better today, i dont no what i had.

i also had to do sleep study that next nite and still wasnt feeling the greatest but went and am glad i got that over with. i had to sleep with the crap mask on, well half a mask, just a piece covering my nose. it wasnt too bad.

so iv got surgery this wednesday to get gallbladder out and hopeing that goes smoothley and then no appts for awhile i hope??????

why is it the drs say no fatty stuff because they dont want me having a attack before my surgery, that i just wanna eat everything in site! i want pizza sooooo bad anything fried! but i no i cant have it. iv been watching what i eat pretty good because of the fear lol. wish i always had the FEAR when i ate and maybe i would make better choices.

my son started 1st grade and seems to like it alot! im so happy. his biggest fear was making friends, he thinks if someone doesnt like you life is over! iv told him not everyone is gonna like you........ he made some new friends though and hopefully this is a good school year.

that boy cracks me up....... bf got him a happy meal the other day and they gave him a girl toy it was alittle doll. my son was like oh a doll this is different he brushed its long hair and then got his sizzors and chopped her hair off lmao. he said her hair was too long. he luckley threw the doll out today....... i dont have a problem with him playing with dolls but he likes girl stuff alittle to much and im trying to break him of that, he use to be obsessed with purses, he likes boy stuff more these days so lets keep with that.

did i mention im hungery! im watching food network and they have on the THE BEST THING I EVER ATE....... im salivating! but i dont eat this late so no worrys will just go to bed hungrey.

SO anyway im just trying to get thrue things going on in my life right now and plan me some goals, things for fun i would like to do. these drs appts and test have just about sucked the life outta me.

i still gotta post some pics from hershey trip and first day of school just being lazy about it. my camera when i hook it up to the computer it loads every last single picture wich is like over 100 and something because i never get them developed...... oops i really need to do that. and so i dont feel like erasing the pics i already have on my computer and cant leave them either, this darn thing is slow enough! one day at a time, i will get it done lol

hope everyone is doing good..... prayers out to lucy and your drs appt tomm or i should say today, hope good news. later

Wednesday, August 25, 2010

Havent been around much because i dont wanna be a downer but tonite just had to write how im feeling!

went to my appt with the lung dr ysterday as i needed to get results from some test iv had and clearance for my ERCP surgery today. well he started off on some results and they were good but by time he was done i just was in a daze, denial whatever you wanna say. i have interstitial lung disease wich is caused from my muscle disease. normally with the meds you take for the muscle disease it should help the lung disease but in my case its not working, its getting worse. he said i have 40% lungs working, so thats pretty depressing. said if it gets any worse id have to see about a lung transplant down the rd! :( i dont really no what to do theres nothing else the lung dr can really do for me, hes already gave me oxygen....... its all up to a rhemy specialalist to find the right medicine or switching around the meds and upping doses wich really isnt possible im on the highest dose. so my muscles arent getting better , i cant breath, what else is next! hopefully with these two surgerys , one today and the other next week ill be gallbladder free and that problem gone. MOVING ON........

went to hershey park monday it was fun! i so didnt wanna go but bf made me and said if i didnt go he wouldnt and was just really pushing the issue so i gave in. my son had a blast, i took some pics i will post soon. i rode around on a scooter all day lol at first i was like everyones looking at me....... but then as the day went on i liked it. hershey park is quite hilly so you get a nice workout! i mean i didnt get a workout but everyone else around me sure did, we were there from 10 am to 9ish pm, it was a lonnng day! i got off the scooter at the chocolate musuem and thought ill be fine, i'll take the ride they have inside that shows you how they make chocolate and walk around look at things etc.Boy was i wrong. i get so worried that im holding everyone else up so i over did it a few times walking to fast and had to stop and really couldnt breathe, was coughing my head off ...... i got scared. my bf luckley really looks out for me and was like just take your time, forget everyone else and i no he was worried. I learned a lesson that no matter how much im embarrassed about carrying my oxygen around in this shoulder bag thing i need to, just for cases like this ! i never use it but i sure will from now ON! in the end i had a lot of fun and it was better than staying home all alone. my son starts school today, first grade, im excited for him, i hope he likes it! if he doesnt he will be sure to let me no, that boy cant keep nuthin to himself. oh and i did a drive by hit n run on the scooter! lol not really funny but i didnt realize i did it! i scraped my sons leg, he moved too close to me i say but he says i just plain ran him over! hes so dramatic, the scrape looks better today already.

Monday, August 16, 2010

Had an okay weekend iv gotta really think about what we did my brain is shot these days, i have a hard time remembering things lol!

saterday we ended up going school shopping and that is a nightmare! my son is big for his age and he wears size husky pants. went to old navy and they had one pair of jeans left in his size and husky. i guess im gonna have to shop around real hard cause husky goes fast. i did find him one pair of husky size at the thrift store and they were like new! i scored 2 like new shirts for myself. got a bookbag and so still have to get sneakers and school supplies! Man getting stuff for school gets worse every year and more exspensive grrrrr.

went to my fathers afterwards and my older brother was there, havent seen him in months or my father for that matter, we arent close. it was a nice visit though and for once my father who normally acts like everything is okay nothings wrong with me etc , he was acting very worried about me for a change. when i got to leaving he gave me a hug and said everything will be alright, it was wierd but nice!

my sis came over too and offered to take my son for couple days so i said sure i aint no dummy, take him! lol me and my boyfriend ended up going out to a nice dinner and coming home, to tired to go out and do anything else.

so i thought yay ill have a few days kid free............ Hes BACK HOME ALREADY!:(my sis called today and said he was crying and kept saying he missed me and wanted to come home. i tried to talk to him and see whats going on but he wont give me a straight answer. he started this crying stuff when spending the nite at someone elses like a month ago. he use to love staying at people houses but after couple hrs or one nite he wants to come home. i think hes worried about me , im not tottally sure and it could be something else but i think he hears too much about things going on.

my family is CRAZY! i come to find out they are all talking about me behind my back like im on my death bed and talking about whos getting the kid WTH! first off im not dead and hope to not die for a veryyyyyy long time and whats going on with me is still uncertain so dont jump to conclusions geez! plus he has a daddy and hes a good one you cant just take him from him. my boyfriend aka the daddy heard all this hes the one who told me and he just shakes his head and is not letting it get to him.

so my goal or plans this week is to call my rhemy drs office and get them on the ball about getting my medical records to the lung dr because even after iv told them over a month or so ago to do so they havent. i have a appt with lung dr thursday and so i need them sent by then. next i need to call the surgeon and see what the results are from my catscan done last tuesday and pray to god its good news! and just do some things around here that need to be done.

Thursday, August 12, 2010

Well iv been a busy girl with drs appts and such so havent felt like writing!i had a mri done and catscan recently. come to find out the GI DR said i probobly didnt have any stones in my bile duct......... and so i had another mri done and BAM i have multiple stones in my bile duct! :( now i have to have a ERCP done, im having it done the 25th! im nervous, iv never had any kind of surgery before. im scheduled as long as everything goes okay with ERCP to have my gallbladder removed september 1st. so had catscan done on tuesday and im waiting on results for that, they wanted to see about the mass's on my lungs i guess to see if they are still there or got bigger????? also found out tuesday when i seen the surgeon and she was going over my last catscan report that it said i had Pneumonia . well that catscan was done the 1st week of june and may 1st i was very sick for what seemed like forever so i had this for at least a month if not longer and no one told me till now. if its gone now it would be because iv been on a antibiotic for 2 yrs now, so also dont no how i got it! so this recent catscan i got done tuesday is to also make sure i still dont have it.

I really hate when i find things out all late and wrong!

sleep study again on saterday OH joy!

lung dr/pulminary test next week, then following week, appt with lung dr again plus surgery then following week surgery again!

im really not liking the month of august right now! i hope they dont add anymore test to my list i cant take no more!!!!

Boyfriend and his boss's family wanna go to hershey park next week or soon before school starts. i could care less, i cant ride rides and i cant do all that walking so really its no fun for me. plus its exspensive $50 some dollers and not even gonna ride rides! im sure if they go ill end up going just cause i dont wanna be left out lol. ill have to get a scooter or something, geez i can see it now!

also what sucks is my surgery thats on the 25th well thats the first day of school for my son, going into 1st grade. im gonna miss that :( im hoping my sister can get him on the bus for me.

well thats my life these days not the greatest at the moment! I do have faith that in the end things will be better and hopefully i'll be a little better. i hope everyone is doing well, iv been slacking on blogs :( later

Wednesday, August 4, 2010

Went and seen a new dr today, i had to go see a gastrointernalist or something like that,i just say GI dr.

he was awesome and not anything like my other drs lol he was like pimpin lol he had his shirt half unbuttoned and a chain and called me sweetie couple times, i dont really no what to say but he was so friendly and made me feel at ease . basically i had to go see him because the surgeon wont take my gallbladder out till this dr looked at me because i supposly had a stone stuck in my duct. this dr here says he doubts i have a stone stuck because id be in major pain everyday so he told me to get a MRI done and blood work. the last MRI i had done was last yr and thats what had stated that i had a stone stuck but the dr said hes sure iv passed it since then.so made my appt for the MRI on monday, not looking forward to that i dont like inclosed spaces so i hope he can give me something to chill out. got my blood work done wich i needed to get done anyway also.

the oxygen company called today and left me a message on when can they come out with my oxygen and show me how to use it etc. HOW ABOUT NEVER! i no the lung dr said i need it when im being active and sleeping but now that they accually wanna come deliver it its a rude awakening, i dont want it and i dont want to use it. People say you start using that stuff you'll always need it and i dont want that to happen.

when i have trouble breathing i no how to get myself calmed down and get my breathing under control so they can bring it to me but i serouisly doubt ill use it.

i have a busy month with dr appts iv got one for each week of this month!

my son starts back to school the 25th so that will be nice, 1st grade! i think hes excited its hard to tell lol i think hes just excited for new clothes, he loves clothes! my sis said she would take him for a week before he goes back to school, i hope so, it would be nice for him since he hasnt seen her in quite awhile.

Monday, August 2, 2010

Heres some pics of demolition derby etc.......THESE ARE WHAT MY FRIED PICKLES WERE SUPPOSE TO LOOK LIKE BUT DIDNT :(A PIC OF ME AND MY BIG BOY! SORRY ABOUT HOW THE PICS ARE I DIDNT NO HOW TO LOAD THEM RIGHT LOL THIS IS COUNTRY LIVIN!

Sunday, August 1, 2010

SO the sleep study wasnt bad but it was a rough nite, i hardley slept. The woman who was to hook all the wires up to me and watch me etc she was awesome so friendly! i love when you get a nice friendly person because it really helped me to not be nervous. the room looked nothing like i thought it would it looked like a hotel room, had a full size sleep number bed. i got there at 9 had to get some blood drawn and sign some papers and by time she hooked all the wires up it was like after 10:30 so i layed there and read my book, she had to come back in my room a few times because a wire came loose. she was really watching me because theres a video thing pointed at the bed and everytime i moved or the one time i itched my finger she came on the intercom and wanted to make sure the thing she put on my hand wasnt bothering me.i went to sleep at 1 but took awhile to fall alseep i woke up at 2 and went to the bathroom. back in bed it took me forever to fall back asleep but before i new it it was 6 and she was waking me up. i told her i felt like i didnt sleep at all she told me i did reach the stage of deep sleep she didnt think i would. so hopefully i will find out soon if i have to do it again and with the mask on. luckley if i have to go back I will have her again as she works the weekends.

so i came home today and bf got me breakfast i was starving i stayed up a bit and then went to sleep till 1pm. i feel more rested now lol

so guess who is napping now the bf! just when i wanted to go somewheres, oh well.

not much to this weekend it was what it was but at least i got my appts done. later

About Me

Im 30, im shy but outspoken. i have a boyfriend of 7yrs, a 6yr old son and a cat named lola and puppy gummybear. I was diagnosed with polymyositis/muscle disease in August "08 and am in treatment. Little by little im getting better and hope to one day be my normal self again or as close to it. I also am trying to loose weight for what seems like will be the rest of life but im no quitter!Thank you for stopping by!